ME/CFS Genes Study

We are currently recruiting ME/CFS patients AND Healthy Controls for this completely web based study to create a one of a kind genetic database for individuals with ME/CFS.

Participation for this study requires you to have a computer with internet access, an email account and your agreement to map your genes through the use of a publicly available genetic testing websites. If you agree to participate, you will provide us with your raw genetic data for us to compile in a one of a kind, ME/CFS Genetic Database.

Besides providing us with your genetic data, participants will be completing online surveys at your own pace. As all communication is done via secure email server, NO travel is necessary and participation can be done in the comfort of your home!

Below, please find all the information you will need to better understand the purpose of this completely web based study including how to participate, and how you will be receiving information regarding this study.

FAQ

How does this study work? Interested individuals must email MECFSGenes@Nova.edu. Please state whether you have ME/CFS or are a Healthy Control. You will receive a personalized link, within 2-3 business days, to a secure web based platform, RedCap, which is how the study is conducted. Once you complete the instructions, you will click on the link and complete a Pre-Screening Questionnaire consisting of 11 questions. If you qualify for the study, you will be directed to a survey queue with an additional survey and an area to upload your raw genetic data.
PLEASE NOTE: The email you receive WILL be encrypted and you WILL have to follow the instructions found here in order to proceed.

Is there an Informed Consent and where can I find it? Will I have to physically sign it and send it in? If you qualify for the study, you will see 2 surveys in your survey queue. The first survey is the ME/CFS Genes Survey. You will find the informed consent on this survey. YOU MUST REVIEW THE INFORMED CONSENT PRIOR TO COMPLETING SURVEYS AND UPLOADING GENETIC DATA. If you do not agree to any part of the informed consent, you cannot continue with the study. Informed consents are signed electronically by simply agreeing to participate in the study and do not need to be printed and mailed in. Please find an example of the informed consent here.

I completed the Pre-Screening Questionnaire and do not see any options to continue with the surveys. What does that mean? If you've completed the Pre-Screening Questionnaire and do not see any options to select further surveys in your survey queue, that means you did not meet the criteria to participate in the study.

I completed the Pre-Screening Questionnaire and see 2 surveys in my queue: ME/CFS Genes Survey and Upload Genetic Data. Must I complete the survey before uploading my genetic data? You do not need to complete the survey prior to uploading your genetic data. In fact, you can complete the survey at your leisure in multiple sittings. The site will provide you a return code and a unique URL you will need to follow to re-enter your surveys. With the return information, please do not feel pressured to complete the survey in 1 sitting.

I am currently not diagnosed with ME/CFS but have another disorder, can I participate? This study is intended to collect genetic data for patients with ME/CFS and Healthy Controls. However, you are more than welcome to complete the Pre-Screening Questionnaire and see if you qualify for this study.

Will I have to come to your clinic or see your provider? No. Participating in this study is purely web based, meaning communication will be completed via email. Completing the surveys and uploading your genetic data will also be completed at your leisure using RedCap, a secure web based platform.

I completed my genetic testing from a website. Which companies do you accept? At this time, we are only accepting raw genetic data from 23andme.com and dna.ancestry.com

When I upload my genetic data into my survey queue, is there a specific file format I must use? YES! We need your data in a .csv, .txt., xlsx or .zip file format. Please ensure with whichever company you choose your results can be saved in any of these formats.

Is there a cost for participating in this study? The only cost to you is your payment to the publicly available genetic testing site of your choice. There is no cost to the INIM.

Will I receive medical interpretation of my genetic data?
No. This research study is simply to collect genetic data for future analysis. Information is de-identified prior to analysis so no interpretation can be made for individuals.